I tried the intermittent, it didn’t work. So suprapubic seemed to be the final option and I was given literature etcetera.

And what was it like having it inserted under local anaesthetic?

That was very, very sore I have to say. I mean, because I’m incomplete [partially paralysed], having a, it wasn’t sore at the point of it being done but when the anaesthetic wore off, it was incredibly sore. I mean I could feel it and I could feel I’d had a vital organ punctured.

Was that local anaesthetic injected, or was it an epidural?

It was injected, yeah, it was injected.

How long did the pain or discomfort go on for after it was inserted?

It was a few hours. It was, I mean I felt pretty ropey for about 24 hours. And I had to get extra pain killers.

I had a problem with the material. I don’t think I’m allergic to the materials but I think, where they’re in contact with my skin and where I might just lean forwards and move around a bit, during the day it just rubs my skin a little bit and I find I get blistered quite easily.

And the same goes for the little piece of rubber that are in the middle of each leg strap to help it grip and stop it sliding down. That also will blister me if the straps are too tight, and I don’t have any strap to hold the tube in place on my thigh because I had to give that up. It just continually blistered me no matter how carefully we put it on, it just always blistered.

The catheter is a silicone one, which seemed to be the least irritating to my skin. But still every morning we wrap it in a bandage to keep the material away from direct contact with my skin. And if it does, I think if we don’t do it quite carefully and there’s a bit showing through, I find I’ll have a blister by the end of the day.

There are two ways of putting a catheter in the bladder, either through the urethra, through the natural passage, or it can be put through the lower abdomen as a result of a minor surgical operation. It can be performed in many cases under local anaesthetic.

If a patient has to have a catheter permanently, a lifelong catheter, then there are many advantages for them and their carers to have a suprapubic catheter. As I’ve said already, the male urethra is 18 centimetres long and it’s lined by glands, and the catheter will block these glands and you can get infections in these glands. When the catheter is changed, the catheter tip can damage the surface of the urethra and problems can arise as a result.

The suprapubic catheter is more comfortable for patients and it is easier to manage for the carer or the clinical team in many cases. But it’s a matter of choice very often from the patient and it’s very simple. If they do have a suprapubic catheter put in, if it comes out, the opening into the bladder very rapidly closes actually, so that it soon heals. It isn’t, so to speak, a final irreversible operation.

Are there any disadvantages of having a suprapubic catheter?

If you ask patients who have had both, most people will say they find a suprapubic catheter much more comfortable than having a urethral catheter. They don’t get the irritation. Males for example, if they have a urethral catheter, it can cause irritation. It can cause erections and difficulties from that point of view and they’re free from those sorts of complications if they have a suprapubic.

This is the bag. That’s the tap end but on one side as you can see, it’s velvety, it’s sort of, it’s cotton backed, so it doesn’t affect the skin. It doesn’t make you sore or a rash or anything. And it just goes nicely there like that. That goes inside the trousers, just like that.

And how do you keep it in there?

And there’s no tube. And on the top there’s these little eyelets and I just thread through it, I thread a lace. Either a football lace or a piece of ribbon. I’ve got lots of different ones. I match them with the different colour pants I’ve got. Cos you can get these in shocking pink, purple, orange, and this is what I do. I just tie it; I’ve got a red one on today. And it’s just tied. And that’s where it is. In there. Not down my leg anywhere.

And because it holds 600 ml, that’s a fair amount which is spaced out nicely. If you’ve got a smaller bag you’ve got a big lump. But this size, and it’s so easy to empty. I’ve only got to just get the tap out, and I can empty it whether I’m sat down or on the toilet. And it just all tucks in. And I can wear quite tight jeans and shorts. Or even a swimsuit.

Yes. Can you show me your catheter as well, for the recording.

Yeah.

I need to know when you’re ready.

My flies are undone. Now I wish I’d lost a lot of weight you see before you came.

This is the female length catheter. And so the only tubing you’ve got once that’s inserted is that little bit there, which just goes in like a little loop there. And it’s connected straight to the bag, to that end. So there’s no tubing, absolutely no tubing. So you’re almost peeing straight into the bag, into there.

So there’s no, it doesn’t kink, whereas if you’ve got a longer length which you’ve got to sort of tuck and put away, I find it kinks. And you get into all sorts of trouble, apart from the weight of it, you’d be surprised how heavy that is if that’s hanging off that, you know the opening, the sore, the catheter site itself. And these have been terrific, and these are the Manfred Sauer ones.

I went for the operation which was done under sedation, very simple, for me anyway, it was, I just fell asleep and woke up and it was all done and very neatly. But when I woke up and I looked at where it was put, I was really alarmed because it was very low down on my kind of pubic bone, really near my vagina and really near my clitoris.

And I thought, Oh my Go, and I didn’t say this to anyone, not my husband, nobody. But I thought, Oh my God, am I going to be able to have sex again, will it get in the way and then I thought, Am I even going to be able to have an orgasm again Because I had like this plastic tube right near a very sensitive place but I didn’t say anything about this.

It took me two years to decide to have it re-sited because I hate hospitals, but I did have it done and it’s great because now it’s much more out of the way for sex so it isn’t quite as annoying as it was before.

it’s a little bit higher up is it now?

Yes, it’s higher up.

So almost at the level of the belly button?

No, it’s to one side, because I wanted it slightly to one side because the good thing this time was the siting was done in consultation with me and my consultant and that is brilliant. Because then you can both have a discussion about, well I said I’d like it here and then he could say well actually here might not be so good because of this, then me and my husband could decide again where we wanted it.

That’s good.

So that was really good but that took quite a few

Six years.

Yes, of talking, and the fact I would say to anybody who is going to have a suprapubic catheter, ask about siting. Decide where you would like it and then have a conversation about that because it’s really important to do that.

How do you decide where exactly to insert the suprapubic catheter? Do you have a discussion with the patient about that beforehand?

Well there’s not a great deal of choice where you put the suprapubic catheter in. It just has to be above the pelvic bone, about 2 centimetres above the pelvic bone and you have to make sure that the bladder is filled under the abdominal wall. That’s one of the most important aspects because if, for example, they’ve had abdominal surgery and there’s a scar in that area, you may have bowel stuck down behind the scar and there is a risk, a serious risk, that you may penetrate the bowel when putting in the catheter.

So there are very clear rules, so to speak, for the clinician to follow before he puts in a suprapubic catheter.

Most off putting thing about having my suprapubic catheter was just, one minute you’ve got a stomach there and then the next minute you’ve got a stomach with a tube coming out of it. And it’s more strange than off-putting but, within days, you don’t see it at all. So you very quickly adapt and change to suit really. And that goes with every other problem really. You quite quickly find a way round things or a different way of doing something, or not doing it at all, and doing something completely different.

Did they (medical staff) try intermittent catheterisation while you were there?

Yeah, they did yes. Like I say on two occasions, and one I had quite a bit of bleeding. So they decided, well we discussed it, they give, you know I had a discussion with the urologist and they told me what my options were. And so really I decided for myself that it was going to be a suprapubic catheter.

And you were fitted with that before?

Just before I came out. I had, I think it was a fourteen millimetre, which I didn’t have any trouble with blockage. But whenever they used to change it, I used to get difficulty over the nurses, the district nurses used to have difficulty re-entering the new suprapubic catheter. And so, in the end, they said it needed re-siting.

So I went back to the hospital after probably after about nine months. And they decided that rather, than re-site it, they put a bigger catheter in. So I think I’m on 20 millimetres now.

In 1988 while playing rugby for a school team, I broke my neck so was taken to hospital. And so didn’t have a choice. And when I came round I didn’t realise I had a catheter for a while cos I didn’t know that was going on. But I had a suprapubic put in then. And then a few years later they exchanged it for a urethral one. But then changed it back again about ten or so years ago to a suprapubic, so I’ve had one for quite a while, yeah.

Did they discuss the changes with you? Were you given much of a choice? Obviously at the beginning you came round and you had one so that was what they decided what was best at that point.

Yes and then they thought, I think they said a urethral one would be easier to change in case of blockages. But then the urethral one was sort of eroding away the end of the penis, so they had to change back and put a [suprapubic] one in. So I sort of had one in situ probably as long as at least ten years.

Yeah. So in 1988 when it all happened, how old were you at that point?

I was 16.

I’ve got MS, Multiple Sclerosis. When I first became ill, I had very minor symptoms and it didn’t really affect my life much. Then after about ten years, I would say, I began to have quite major problems, disability wise, that did affect my life. One of which was I became incontinent, with urinary incontinence. So I started wearing continence pads but it got to the stage where, because with my MS, it was very tiring and difficult to change the pads.

So I found myself limiting the amount of fluid that I drunk, and actually getting to the stage where I didn’t want to go out much because I was worried about whether I would need a loo and even if I needed a loo it would be too tiring and difficult to change my pads. So I really felt that my life was being severely limited. Plus my health was at risk because I just was not drinking the amount of fluids that I needed to.

So I talked to my continence nurse who was great, and she suggested the idea of maybe a suprapubic catheter. I completely dismissed this to begin with. Then I went to my urologist who was really great and he recommended a suprapubic catheter. And he was great he, he said Obviously anything is your decision but I think this might really help you. Again I really didn’t like the idea. My continence nurse showed me a suprapubic catheter and I just, I really didn’t like the idea. I felt like I’d be like some awful version of the bionic woman with this kind of plastic tube coming out of me. And for me my body image is really important, so I didn’t like the idea at all. My urologist said to me he thought it could be really liberating but I was still resistant.

I want to make the point that, for me, having a suprapubic catheter has totally liberated me, really changed my life. I’ve been able to go abroad on long haul flights. I can go out for the whole day visiting people or doing work shops or training or giving public speeches without having to worry about, Do I need the loo, I can’t drink this I’m able to drink as much water as I like, and it really helps me.

My bladder trouble started around the time I had a hysterectomy for uterine cancer. After that, my bladder was a bit iffy but manageable and no real problem. But then two years after my hysterectomy, I had a secondary and I had to have radiotherapy, including a 24 hour implant, during which time I had to lie absolutely still in bed. It was very interesting lying absolutely still in bed. And that meant 24 hours on only hospital sandwiches cos you couldn’t sit up to eat anything or drink anything. It was quite an ordeal.

After that the bladder trouble really got increasingly bad. And I ended up getting a whole series of infections, difficulty in both sometimes in passing urine, but difficulty in not dribbling. And last year I had I think it was 15 courses of antibiotics for bladder infections. And I found myself dribbling all day and flooding at night, and it was just unbearable.

So when I was offered a catheter I thought oh dear that wouldn’t be at all possible because I was so sore down below because of the urinary problems. But then they explained to me that a suprapubic catheter would be what they would offer. And I thought well that should be possibly okay.

So after a lot of waiting around for hospital appointments and having difficulty with a consultant who didn’t want to know, I then got side stepped and sent to another one who was kind and competent and willing to see me, and willing to do the necessary. And I did have time with him to find out what he thought, what good he thought it would do. And he particularly wanted me, if I agreed to have a suprapubic, to have it under general anaesthetic because he wanted to see if he could stretch my shrunken bladder and get it to be more tolerant and hold more volume of fluid.

Can you explain why you made that decision to change?

Well I think roughly every two years, you go on, I go back to my spinal unit and have, well we term it an MOT. it’s basically a once over everything. Gives you a chance to catch up with your consultant, find out whether there’s been any advances in the treatments, particularly for bowel and bladder care. It allows them to do the ultrasound and the x-rays to find out how the bladder and the bowels are operating. Whether there’s any build up of kidney stones, bladder stones, all of that sort of thing.

And I suppose it was about, oh it must have been about 15, 16 years ago, and at that time we were talking about the fact that I’d had the urethral catheter for a long time. And that the spinal unit was finding that, I think the research and the outcomes from having suprapubic catheters was quite good at that point. And was felt to be one, you know, one further way of cutting down the chances of getting bad bladder infections, and the, probably the ease of maintenance around the suprapubic versus the urethral.

And through chatting around all of that with my consultant, I decided that it was probably about the right time to change. And so I went into my spinal unit and they took me down to theatre and made the insertion into my bladder through the stomach wall. And I’ve had a suprapubic ever since.

Was that done with a local anaesthetic?

No, it would have been a local anaesthetic, again it was probably an epidural again they did that under.

And can you say a bit more about what it’s like to have a suprapubic catheter?

Yeah, I mean the one downside I suppose is, because of the insertions through the stomach, I’ve lost some of the muscle flexibility in the stomach. So my stomach size has increased a bit, which it probably wouldn’t have done ordinarily.

But other than that, I mean I suppose from a practical point of view, there’s not much difference between having had the urethral one or having the suprapubic, just one went into my urethra and one comes out of my stomach

Just going back to when you were in hospital. You became aware that you’d been catheterised, was there any discussion about this?

Initially, I can vaguely remember being told and asked to see if it was okay, see if I could be catheterised. But wasn’t really aware of it, like I said. I did have quite a few bad bladder infections that had backed up to my kidneys whilst I was in hospital. And again, being spinal injured, that brings on certain other affects. And so I suffered quite badly with that, and that put me on bed rest for another week each time. So, over the six months, I was probably a month in bed on top of that because of the urine infections.

And for that reason, and because of the limited function in my hands, it was decided that medium or short to medium term, a suprapubic catheter would be more suitable. And, since then, yeah, you know it’s proven to be a lot more suitable, or a lot easier to use.

Yes. So has the mobility in your hand, has that improved over the course of time?

I don’t think the mobility has. The strength in my fingers has improved but I’m not able to move my fingers any more. I’m more confident using my fingers, so I’m able to use what I’ve got better, but I don’t think I’ve got much more function.

He’d [David] had prostate cancer treated by radiotherapy two years before, which is about 6, 7 years ago now. And obviously very successfully because his PSA is still 0.1, whatever the grade is, I can’t remember, but it’s very low. And so that was fine.

But when he went into hospital with the stroke, he had a huge bladder capacity, which the bladder was very distended. And they put in a urethral catheter and drained off nearly 6 litres of urine. So that stayed.

Three or four months later, they tried very hard to see if he could live without a catheter. But obviously the control wasn’t there. He had control over his bowels, but not control of that. So then eventually it was recommended by a doctor that David had a suprapubic catheter, which has been very, very successful.

If you were trying to reassure somebody who was trying to make a decision about having a suprapubic catheter as opposed to a urethral catheter, what are the pros and cons as far as you’re concerned?

For me, I can see it and I can control it. Because I can’t separate my pelvis and I couldn’t explore myself urethrally the way some people might be able to do. But, for me, the suprapubic is much easier, more functional. It allows me to take responsibility. I also think I would find a urethral catheter very sore, and I couldn’t go horse riding or anything like that.

This enables me still to horse ride, to go on an exercise bike, that kind of thing that I couldn’t do urethrally. Because around the urethral area, I am, I still have some, a little bit of sensation and I think I would find it very sore.

That’s a big advantage.

it’s a big advantage, yes. The suprapubic, you don’t get any pain from the suprapubic. You can keep it clean. You can see whether it’s functioning or not. I can see the colour of my urine. I can see if there’s sediment in it. I can smell it. I can, it gives you control back in a situation where God knows we all feel we’re completely out of control.

That’s really important.

It is important. Once you come to terms with the situation, you think, Okay, well how best can I deal with it, given that that’s the way it is And I have to say the suprapubic has proved to be the best for me without doubt.

2010, yes, I started getting infections, UTIs, urinary tract infections, mainly at catheter change time. But in 2011, I actually started, I had a series of UTIs which took probably three months to sort out and included a hospitalisation because of a reaction to one of the drugs which I was given.

Anyway subsequent to that, after the end of that, I actually went to see a consultant urologist to talk about indwelling catheters, suprapubic catheters, and actually was given some information which sort of indicated that it’s a problem, right. I was actually given some things to read which indicated it was an indwelling, the suprapubic catheters were technology which hadn’t changed in fifty, sixty years, would have an impact on my life expectancy, especially regarding urinary tract infections and also kidney, renal failure in general because of a backflow to the kidneys.